6

Technology to Support Independence

Technology has the potential to improve function and enable independence for people of all ages who have disabilities. The workshop’s final panel featured three presentations on the role that technology can play in supporting independence. The speakers addressed how technology can increase accessibility, how some of the potential technology-based approaches may play a role in supporting independence in the future, and how technology can be used to promote health and well-being today. Before the presentations began, to illustrate how little the nation is spending on technologies such as remote monitoring that could support independence, the panel facilitator Robert Jarrin of Qualcomm Inc. noted that the Centers for Medicare & Medicaid Services (CMS) budget for telehealth services is only $12 million out of a total budget of $897 billion.

TECHNOLOGY FOR ACCESSIBILITY

David Baquis
Accessibility Specialist, United States Access Board

The United States Access Board (the Access Board), explained David Baquis, an accessibility specialist for the board, is an independent federal agency that promotes equality for people with disabilities through leadership in accessible design and the development of accessibility guidelines and standards. Its mandate also includes responsibility for technical

assistance, training, and research. The Access Board is concerned with ensuring that both the built environment and the technological environment are accessible, although Baquis’s presentation focused only on the technological environment.

Baquis offered a number of examples of technological accessibility, including

• Accessible voting systems (required by the Help America Vote Act, with guidelines written by the Election Assistance Commission)
• Accessible electronic health records (required by standards issued by the U.S. Department of Health and Human Services)
• Accessible telephones (required by the Federal Communication Commission)
• Accessible automatic teller machines (ATMs) (required by the U.S. Department of Justice standards, under the Americans with Disabilities Act [ADA])
• Accessible websites and online learning in the federal sector (required by Section 508 of the Rehabilitation Act)

In addition to accessible technologies, there are thousands of assistive technologies that help older adults and people with disabilities. One of Baquis’s favorite assistive technologies, he said, is the caption telephone, which allows a user to simultaneously hear and read what someone is saying, which is a great help to someone who has difficulty hearing. Importantly, he added, both the phone and the captioning service that enables this technology are free with approval from an audiologist or physician. However, Baquis said, it is a big challenge to raise public awareness about the availability of these technologies and about the fact that many states have a free distribution program for accessible telecommunications equipment. Other examples of assistive technology include talking blood glucose meters and technology to prevent people with dementia from wandering. However, assistive technologies for activities of daily living have to be particularly expensive or technologically complex to provide great utility, Baquis said. For example, an adaptive grip for a spoon can have great value to the user.

Turning to the subject of standards, Baquis explained that the Access Board was created in 1973 to ensure access to federally funded facilities and is now a leading source of information on all types of accessible design. The Access Board develops and maintains design criteria for the built environment, transit vehicles, telecommunications equipment, medical diagnostic equipment, and information and communications technology. These guidelines and standards are updated as necessary to address changes in technology and practices and to include specific

criteria for areas not previously addressed. For example, the original ADA Accessibility Guidelines published in 1991 have been updated to address specific access issues relating to the following types of facilities: state and local government facilities (1998); building elements designed for children’s use (1998); play areas (2000); and recreation facilities (2002). New accessibility guidelines are being developed for medical diagnostic equipment, passenger vessels, public rights-of-way and shared-use paths, and self-service transaction machines. At the same time, the Access Board is updating its requirements for accessible rail vehicles, buses, and vans.

The Access Board also provides technical assistance and training on the various governmental requirements and on accessible design, and it develops guidance and best practices such as accessible prescription drug labelling.

FUTURE POSSIBILITIES FOR TECHNOLOGY TO HELP MAXIMIZE INDEPENDENCE

Thomas Wlodkowski
Vice President of Accessibility, Comcast

Accessibility, said Thomas Wlodkowski of Comcast, is a measure of how effectively people with disabilities can interact with products and services. Older adults also benefit from solutions that enable accessibility. For a variety of reasons, only a small percentage of the people who would benefit from accessible technology have access to that technology. Affordability is one key barrier, but another barrier is that many of the people who could benefit from these technologies do not self-identify as having a disability. Many older adults fall into this latter category. The demographics of the American population, both in terms of the number of people with disabilities and the increasing number of older adults, point to an enormous market for accessible technology products. The challenge for a technology company such as Comcast is to decide which accessibility solutions to build into their technology products and which to accommodate by making the technology compatible with additional services or devices.

In the context of Comcast customers, Wlodkowski said, accessibility means that someone who has visual impairment or a physical disability can purchase an on-demand movie or change television channels using a voice guidance feature, and someone who has difficulty hearing can access closed captioning across all of the company’s platforms, including the set-top-box and mobile applications. Manual dexterity-challenged customers can use a remote control with extra-large buttons; Comcast

ships approximately 2,000 of these remote controls to its customers each month, said Wlodkowski.

Comcast’s accessibility efforts, he said, are founded on four fundamental pillars. The first is consumer engagement. “We don’t ever want to build products in a vacuum,” Wlodkowski said. “We want to make sure that we’re engaging our customers that we’re building for and understanding what it is that we’re building and . . . what value we’re trying to bring to the table.” Comcast engages consumers through roundtables with representatives of various segments of the disability community, which afford the company’s executives, product designers, and engineers the opportunity to meet with thought leaders and get feedback on the usability of existing products and identify gaps that need further attention.

The second pillar is infrastructure, which includes Comcast’s accessibility laboratory. The laboratory is where people can try different technologies that might help individuals with disabilities in their daily activities and determine whether these technologies are compatible with other products and services. The third pillar, Wlodkowski said, is customer service, which comes in the form of having a dedicated support center for customers with disabilities. It is staffed by representatives who are knowledgeable about the issues that these customers face and the technologies that are available to them.

The final pillar is the company’s accessible products. In 2014, Comcast launched its voice guidance system, which is the cable industry’s first talking guide that enables people who are blind or visually impaired to independently access content and control their set-top boxes. Previously, someone with visual impairment was limited to using up and down buttons to navigate channel menus, but the new system announces whichever menu item is highlighted on the screen. This voice activation is not a unique add-on feature for those with disabilities—it is universally built into the standard remote control that is provided to all who get this new platform. Furthermore, this feature is integrated into a cloud-based platform that enables the company to introduce new accessibility capabilities without the need to install additional hardware or software in the customer’s home, and it allows the company to deliver new accessibility solutions much faster.

Another new product Comcast is developing to increase independence for people with disabilities combines home security, automation, and management services to give individuals with disabilities and older adults the ability to take advantage of smart home technology through a single, integrated interface. As part of this project, Wlodkowski’s

team conducted research at the Inglis House,¹ a residential facility in Philadelphia for people with physical disabilities, in order to identify gaps in home automation and determine how home automation could interact with existing assistive technologies. One gap Comcast is trying to address is the relative lack of accessibility of home automation. The existing technologies that enable people to maximize their independence, such as home automation, can be very expensive, Wlodkowski said. However, by integrating features that enable independence into a product that can be mass-marketed—rather than marketed to only those with very specific needs—costs might be driven down, making this technology more affordable for a population that is often living on very limited budgets.

Another advantage of this product is that individuals would only have to learn to use and interact with one application rather than multiple different applications. “The ‘Internet of things’ today is still a fragmented ecosystem,” Wlodkowski said. “Each provider has their own app, [but] we are trying to aggregate a lot of third-party Internet-of-things devices under the control of one app.” The proposed Comcast product might also enable alerts and other notifications that could play a role in remote care for those who are trying to live independently. Wlodkowski acknowledged there are many privacy concerns that need to be addressed for these types of applications. Comcast is “at the very beginning stages of thinking about all of the possibilities that could happen and [that] could be a way to enhance independence, but there are lots of these types of issues that need to be resolved before we could offer products,” he said. More research is required, and developing partnerships with third-party technology providers and consumer groups will be key to understanding where the gaps are that can be filled.

TECHNOLOGY FOR HEALTH—CHANGING THE LOCATION OF CLINICAL CARE

Adam Darkins
Vice President of Medical Affairs and Enterprise Technology Development,
Americas Region, Medtronic, Inc.

Adam Darkins of Medtronic, Inc., began the workshop’s final presentation by noting that while many people have heard of telehealth—also known as telemedicine, eHealth, mHealth, and virtual health—fewer have thought about developing services for it. Rather than getting bogged down in a particular definition of telehealth, he defined it as using information and telecommunication technologies to deliver health care and to

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¹ For more information, see https://www.inglis.org (accessed February 1, 2016).

change the location of care. “What I would suggest to you,” he said, “is that given time, the ability to use these technologies to deliver health care remotely to change the location of care is going to become ubiquitous, and when it does, we’ll just call it health care as it is.”

Darkins said that the same concerns being raised about the cost, usability, and resistance of clinicians to use telehealth were also raised more than a century ago when the telephone was first introduced. And yet now, no one would suggest eliminating using the telephone as an aid in delivering health care. “The issue around these various technologies is not whether they are going to happen,” he said, “but how they are going to happen and why they are going to happen.”

Although he is not particularly fascinated with technology, Darkins said, he became interested in using technology to deliver health care in an attempt to make care more accessible for a population of older adults when their local hospital in London, England moved locations. Although the hospital moved only a few miles away, this extra travel to have access to care could be a significant hardship for an older adult with chronic disease living in a big, crowded city. To alleviate this burden, Darkins’s solution was to provide video sessions for these patients in the primary care clinic that was in the hospital’s original location.

As a result of getting involved in telehealth, Darkins eventually led the telehealth programs at the U.S. Department of Veterans Affairs (VA), which needs to provide a continuum of care for a population that is older, sicker, and poorer than the general population and is spread over a vast geographic area. He approached integrating telehealth into the VA’s care delivery system by examining the health needs of this population and determining how technology could help these individuals live independently in their homes and avoid going into nursing homes. A needs assessment showed that thousands would benefit from the ability to coordinate their care in their homes. He instituted a remote monitoring program that would help identify health problems when they first appeared, rather than days or weeks later, when the consequences of delayed diagnosis could be more severe. The hypothesis was that if the VA could coordinate care using a care coordinator to manage a panel of patients who are monitored using simple technology in their homes that generated information each day, it would reduce the number of hospital admissions and lengths of stay. The system proved successful, Darkins said. It reduced both hospital admissions and lengths of stay, and it is now used to provide noninstitutional care for thousands of veterans.

Another example of a telehealth application that the VA employs begins with primary care clinicians using a digital camera to take retinal images of patients with diabetes. These images are then sent to an ophthalmologist to read, which makes possible an early detection of

changes that could lead to blindness without requiring a patient to visit the specialist.

Darkins noted that much of the way the current health care system is organized is left over from a time when people went to hospitals because of infectious diseases that required isolation and treatment. As infectious diseases have become less common, people have become more likely to go to a hospital because of chronic conditions, which are actually more suitable for treatment outside of the hospital. What is needed, Darkins said, is a mindset shift. The shift should be to recognizing which individuals do not need to be in a hospital bed and finding ways to provide the expertise that is resident in the hospital in locations that are more convenient and appropriate for those individuals. Furthermore, Darkins said, telehealth could be used to aid in making decisions earlier in the disease process: Instead of a person arriving at the hospital with an acute event, such as heart failure, technology could be used to identify the early warning signs of heart failure so care can be managed remotely. Instituting a remote care management system, he said, requires developing methods for training care coordinators to work remotely and building the infrastructure and quality management systems that enable high-quality care. It is not simply a matter of buying and installing technology, but rather it entails identifying a clinical need, figuring out what can be done from a clinical perspective, and then determining how technology can be applied to enable the clinical solution.

As a final comment on telehealth, Darkins stressed that it should not be thought of simply as a way to remotely monitor people; instead, it should also offer the ability to enhance and humanize and make the care provided compassionate. In short, it will be important not to lose the ability to “touch” each patient when providing health care. “If these new services don’t actually touch the patient, communicate, and make sure the things most important in a clinical encounter remain,” he said, “then we really have not done what we should be doing.” In Hawaii, Darkins said, there is a relevant saying: “Touching with the voice.” As telehealth plays an increasing role in the delivery of health care, it will be crucial that this role be based on the needs of the patients, not the technology itself.

DISCUSSION

An open discussion followed the panel’s presentations. Workshop participants were able to ask questions of and offer comments to the speakers. This section summarizes the discussion.

Matthew Quinn of Intel said that there is a great deal of evidence and many examples showing that telehealth technologies save money, improve patient satisfaction and care, keep people independent, and

transform patients’ lives, but the summation of that evidence does not yet meet the requirements of the Congressional Budget Office. “This is a real barrier to [these technologies] becoming more widespread outside of [places] like the VA,” Quinn said. Darkins agreed and noted that teleradiology—taking an X-ray, digitizing it, and sending it to another location where it is read—is becoming more prevalent, even though there is no reimbursement for such a system, simply because the system is so efficient. He used this as an example of how there are ways to set up efficient, effective technology systems in spite of reimbursement obstacles, but he said that finding these approaches will require thought on how to reengineer care. Such technological approaches must be very robust, he said, and cannot fail when being used to provide care to tens of thousands of people; in short, such systems must be reliable.

Mary Worstell of the Office on Women’s Health at the U.S. Department of Health and Human Services said that she appreciated Darkins’ statement that touching is important when caring for patients, particularly in light of the reports about clinicians spending too much time looking at a computer screen and entering data into the electronic health record rather than looking at and interacting with the patient in the room. Worstell also commented on the importance of training the workforce to deal with the hearing and vision problems that older adults experience and the need to communicate clearly since older adults often experience decrements in both senses. Darkins remarked that one benefit of delivering care remotely is the ability to provide access to providers who can communicate with patients in different languages.

FACILITATED TABLE DISCUSSIONS

Three questions were posed to the workshop participants for short facilitated table discussions (answers not limited to what was covered in panel presentations):

• What are the two or three biggest policy barriers for technology supporting independence and community living?
• What should be the top three research and policy priorities for technology supporting independence and community living?
• What best practices have been identified?

The reports from the table discussions were delivered by the following individuals, listed alphabetically: Margaret Campbell, National Institute on Disability, Independent Living, and Rehabilitation Research; Thomas Edes, U.S. Department of Veterans Affairs; Stephen Ewell, Consumer Electronics Association Foundation; Juliet Feldman, Centers for

Medicare & Medicaid Services; Melinda Kelley, National Institute on Aging; Lisa McGuire, Centers for Disease Control and Prevention; Anne Montgomery, Altarum Institute; Jessica Nagro, Eldercare Workforce Alliance; and Rasheda Parks, National Institute on Aging.

Policy Barriers

The facilitated table discussions produced the following list of policy barriers for technology supporting independence and community living, as noted by the table rapporteurs.

Regulatory and Legal

• Policy makers who do not understand the technology itself, the benefits that specific technologies can provide, or the limits of technology with regard to patient-centered care (Ewell, Parks)
• Concerns about privacy and data ownership (McGuire, Montgomery)
• Regulatory approaches for devices that are too slow, given the rapid evolution of technology (Montgomery)
• Health Insurance Portability and Accountability Act (HIPAA) regulations and other policies on data sharing that make it difficult for long-term care providers and other community health providers to access client electronic health records (Feldman, McGuire, Nagro)
• Policies that impede or prohibit the use of telehealth and telemedicine to deliver care across state lines (Parks)
• The lack of standards to promote interoperability of technologies and applications (McGuire, Montgomery)

Financing

• The fact that even though there is a business case for the use of some technologies, reimbursement policies can create challenges to deploying these technologies and to paying for the salaries of the associated specialists who know how to best use these technologies (Ewell, Montgomery, Parks)
• Insufficient funding for research to develop a solid evidence base for the value of technologies to support independence (Montgomery)
• The mismatch between the outcomes being studied and the Congressional Budget Office needs (Kelley)

• The need for comparable reimbursement policies for telehealth visits and in-person patient visits (McGuire)

Additional Barriers

• The need to reassure the public about the veracity of telehealth technologies and that the resulting medical care is of high quality (Kelley)
• The challenge of ensuring Internet access for care providers and patients in their homes, particularly those who receive benefits through Medicaid, those who live in rural areas, and older adults (Kelley, McGuire)
• A lack of a lead federal agency for telehealth (Kelley)

Research and Policy Priorities

The facilitated table discussions produced the following list of research and policy priorities for technology supporting independence and community living, as noted by the table rapporteurs.

Areas for Additional Research

• Study the impact of using technology to change the delivery of care by measuring cost, access, quality, and effectiveness of care (Ewell, Feldman, McGuire)
• Examine potential interoperability between medical and consumer devices in the context of home automation and telehealth to support independence and assist caregivers (Ewell, Feldman, McGuire, Parks)
• Identify the technology-generated information that consumers would share, who they would share it with, and under what circumstances they would share it, according to age, ability, and culture (McGuire, Nagro)
• Increase understanding of what data the Congressional Budget Office needs (Kelley)
• Study how to best integrate remote care models into new care and payment models (Kelley)
• Identify what consumers and caregivers want from home monitoring technology (Kelley)
• Develop methods for monitoring, processing, analyzing, and reacting to information contained in the enormous volumes of data that home monitoring technologies will generate (Kelley, McGuire)

• Study the market forces and incentives needed to develop technologies to help individuals with rare conditions (McGuire)
• Study the potential ethical, financial, and functional implications of technology across various uses and settings (Parks)

Policy Priorities

• Take advantage of affordable hearing-assistive devices to provide access to those with hearing-related disabilities (Ewell)
• Develop consumer protection and privacy policies for health-related technologies and telehealth applications (Feldman, McGuire, Nagro)
• Create technology training programs for both health care providers and consumers in order to increase the acceptance and utility of new technologies (Feldman, McGuire, Nagro, Parks)
• Create a system for rating home monitoring and telehealth technologies according to their use and effectiveness and integrate this system with reimbursement models (Kelley, Parks)
• Educate consumers about the technologies that are already available and disseminate those technologies more effectively (Feldman)
• Establish a national technical assistance center for telehealth and accessibility (Parks)
• Establish a public–private partnership initiative to create a coordinated approach to study the efficacy of technology-enhanced care for older adults and people with disabilities, to be headed by the White House Office of Science and Technology Policy (Montgomery)

Best Practices

The facilitated table discussions produced the following list of best practices, as noted by the table rapporteurs.

Public–Private Partnerships

• The partnership among Japan Post, IBM, and Apple to create a program in which Japanese mail carriers can use tablet-based software to monitor the status of older adults (Campbell)
• The partnership between the Italian government and IBM to put sensors in the homes of older adults to monitor carbon dioxide level, which, among other things, changes when someone is cook-

• ing, and thus is a proxy for an individual’s activity in the home (Campbell)

• The partnership between the University of Missouri and Americare Corporation to create TigerPlace,² a retirement community in Columbia, Missouri. It is a research endeavor in which residents can choose to be monitored with sensor technology. Parameters that are monitored include the participant’s movements, activity level, gait, heart rate, and breathing patterns and restlessness during sleep. This monitoring can aid in early detection of conditions such as heart failure, infection, and neurological disease. (Edes)

Program at the Federal Level

• The VA’s telehealth programs³ (Ewell, McGuire, Montgomery, Nagro, Parks)

Additional Programs and Initiatives

• Project ECHO (Extension for Community Healthcare Outcomes),⁴ a University of New Mexico initiative for managing the care of individuals with chronic conditions (Kelley)
• LeadingAge’s⁵ initiatives involving consumer applications and professional interfaces in technology (Nagro)

Possible Approach

• Build accessibility into products and services from the earliest design stage. Companies already doing this include Apple, Comcast, General Electric, Panasonic, and Verizon (Ewell, Feldman, Parks)

In addition to reporting on specific best practices noted at her table, Kelley reported that the discussion at her table emphasized that best practices will be derived ultimately from real-life learning, not from the scientific literature.

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² For more information, see http://www.americareusa.net/retirement_community/Columbia_MO/zip_65201/americare/1335 (accessed January 30, 2016).

³ For more information, see http://www.telehealth.va.gov (accessed January 29, 2016).

⁴ For more information, see http://echo.unm.edu (accessed January 29, 2016).

⁵ For more information, see http://www.leadingage.org (accessed January 28, 2016).